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What It Feels Like When You're Running Out of Treatment Options

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Throughout my life, I never feared my illness because there was always a next step. I knew that whatever happened there would be a way to make me feel better.

But what happens when that safety net falls away?

That’s where I find myself, sitting across from my consultant who I now see more than most of my friends, watching his face frown as he reads my notes.

“So, we’ve tried all the conventional therapies; unfortunately you didn’t respond to your last drug. What happened when we added the biologic?”

“My arm swelled up.”

He looks up at me. “Swelled, you mean it actually swelled up?”

“Yup,” I sigh. He scribbles on the paper and frowns a bit more. I start twiddling my bracelet, wishing I could somehow be in a different place with a different body. I don’t want to hear what he’s going to say next, because I know where I am now and so does he. I’m now going through the screening process for a clinical trial, and if I get on it I’ll be the first person in Europe enrolled on the study. I’m hoping that reflects more on the foresight of my clinical team than on the precariousness of my situation. I might be on a placebo, I might not, but it’s a shot. It’s something to try. There might be serious side effects, there might not be, but we hope there won’t be. No one can predict the outcome. I’m enrolling on a gamble.

The uncertainty is difficult to bear. I was once top of my class at university, first class, then a distinction, high flying jobs and relatively well. I struggled, but I competed with and surpassed my cohort. I was bright, energetic and excited about my future. Now, where am I? I’m celebrating the days I get out of the house, it’s a triumph when I do an hour of work. My deposit for the house that I’d been saving for is slowly being spent on keeping me afloat while I wait to be able to work again. If I’m able to work again.

People ask me what my plan is for the future. How can I answer that when there’s no certainty about how I will feel in the next month, let alone the next year? How can I plan when the biggest variable in the equation, what I am capable of doing, changes dramatically from year to year and has proven to be set on remaining frustratingly low? Even the bigger life questions, like relationships and children, seem to be dictated by my ever-failing body. How to date when I end up canceling more times than not, or when dating me ultimately means that my partner will be signing up for a much more tricky life than they could have had?

I am not writing this out a of a sense of self-pity (though there is an element of that), but to explain to those without chronic illness what can happen when your options are taken away from you. And, I suspect that underground, there are many of us with invisible illnesses in a variety of precarious positions. I suspect we all wear a strong smile on our faces and appear happy and fulfilled while we struggle each day with diminishing choices. I write in solidarity with you, because I’m learning how difficult that journey is to take. I’m realizing how little support there is for the young, visibly healthy people who may never be able to play the game with the same chances their well counterparts have at their disposal. And I am learning that I live in a society where those around me are far more concerned with catching the fakers than helping those who have a lifetime of fighting ahead of them. That’s the hand I’ve been dealt. Somehow, I need to find a winning hand in this mess.

But, this is the first time in my life when I’m beginning to fear I’m not going to turn up trumps. And that scares me more than anything I have faced before.

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Thinkstock photo by KatarzynaBialasiewicz

Originally published: April 3, 2017
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